Among the most powerful instruments of healing are patients’ relationships with their doctors or clinicians. Feeling seen and valued by the clinicians they trust helps patients retain a sense of meaning and human connection during a time of fear and uncertainty. This relationship, rooted in trust, is one of the only things that provide comfort for patients. The sudden, life-changing diagnosis of a progressive neurodegenerative disease threatens their ability to live independently and hold on to their identity. When clinicians see and express care for them as individuals beyond their illness, patients and families can retain a sense of themselves and intrinsic worth in an otherwise unpredictable storm.
Communication is a procedure
Since physicians do not measure or bill on the quality of their relationships with patients, some may lose sight of its importance. Evidence is clear – part of what makes it possible for people with serious illnesses to carry on is the trusting relationship with their clinicians.1,2
Practitioners have a responsibility to be conscious of this and work to build a strong connection with patients and their families.
Despite widespread recognition of the importance of the doctor-patient relationship in quality care, the skills needed to build trust and connection are not part of medical education. Why is it that institutions train surgeons to perform complex procedures, but not to have serious, emotionally complex conversations with their patients? Medical students nor residents are ever sent to conduct a surgical procedure alone; they require years of observation, mentoring and training from experts, and gradually increasing levels of supervised participation. Communicating with patients about what to expect regarding their illness, and how best to navigate their future is a procedure, similar to surgery. It involves stages, steps, strategies, and skills that can be mastered over time. Somehow, this is missing from the curriculum of medical students, residents, and fellows. The only remedy is to get the training as mid-career professionals.
Getting better at what we do
As indicated in Zehm et al, a communication framework may help neurologists gain these skills – including language and best practices to increase patient and family understanding of their serious illness, how to manage, and how to cope as it progresses.3 Communication skills can be learned.4,5,6 Nonprofit organizations like VitalTalk are experts in training mid-career physicians and nurses in how to conduct conversations in a meaningful, expert manner, and how to work towards building trust and connection with patients and their families.
The communications framework that clinicians often seek when having serious conversations, whether breaking difficult news or talking about the progression of a serious illness, includes following a set of rules.7 First, always offer a warning, to help the patient and family prepare for what is to come (e.g., “I have the results of your test”). Then, ask permission, restoring agency to the patient (e.g., “Would you like to talk about the results?”). Next, say what must be said (e.g., “The test showed that you have ALS”), and then allow silence so that the patient can absorb and begin to process the news.
A physician should not break the silence on his/her own, as important inner work is happening for the patient and, if present, family. Instead, he/she should respond when the patient or family speaks, offering choices and showing respect (e.g., “Would you like to talk about what to expect and how we will work together through this illness?”). Acknowledging and validating their emotions as they process difficult information is crucial (e.g., “I wish things were different”, or “this must be very difficult to hear”). Doing this allows the patient to feel heard, as the physician notices and responds to the emotions he/she has entrusted.
The investment of time in learning to communicate pays off a hundredfold. This is why training matters; it enables physicians to be conscious of actions that they used to take (with the best of intentions) which may actually not be to the patients’ benefit.
When to call palliative care consultants
At any point, if physicians would like an extra layer of support to add to the care that is already being provided, they can call upon colleagues on the palliative care team. This team, which works as consultants alongside the neurologist, focuses on providing relief from the symptoms and stress of the illness. They help to improve quality of life for the patient and the family, which the physician’s team may not have the time or staff to do. This includes assessing and responding to social, economic, spiritual, housing, food security, and caregiver factors, all of which are foundational to living as well as possible with a serious illness.
It is important to know that palliative care is based on the needs of the patient, and not the patient’s prognosis. Patients benefitting from palliative care may be seeking a cure (e.g., rehab from a stroke), life prolongation (e.g., treatment of multiple sclerosis or Parkinson disease) or remediation of symptoms and stress during a long serious illness (e.g., Alzheimer disease).
There is growing awareness of palliative care, particularly among younger neurologists, who trained in an era when palliative care is routinely present in teaching hospitals.8 They recognize the value of a concurrent care model, and increasingly consult with palliative care teams for their patients with serious illness, like dementia, ALS, and Parkinson disease. Currently, a growing group of neurologists, who focus on the intersection of neurology and palliative care in their research and clinical practice, have established the International Neuropalliative Care Society.9
Neurologists routinely care for people living with dreaded and devastating illnesses. While new research and treatments can now prolong life and improve function during many of them, physicians must always surround their patients with care, respect, and attention to the quality of their lives. For everyone’s benefit, communication skills training is the place to start.
1. Olaisen RH, Schluchter MD, Flocke SA, Smyth KA, Koroukian SM, Stange KC. Assessing the Longitudinal Impact of Physician-Patient Relationship on Functional Health. The Annals of Family Medicine. 2020;18(5):422-429. doi:10.1370/afm.2554
2. Birkhäuer J, Gaab J, Kossowsky J, et al. Trust in the health care professional and health outcome: A meta-analysis. PLoS ONE. 2017;12(2):e0170988. doi:10.1371/journal.pone.0170988
3. Zehm A, Hazeltine AM, Greer JA, et al. Neurology clinicians’ views on palliative care communication. Neurol Clin Pract. 2019;10(6):527-534. doi:10.1212/cpj.0000000000000794
4. Roter DL. Improving Physicians’ Interviewing Skills and Reducing Patients’ Emotional Distress. Archives of Internal Medicine. Arch Intern Med. 1995;155(17):1877. doi:10.1001/archinte.1995.00430170071009
5. Fallowfield L, Jenkins V, Farewell V, Saul J, Duffy A, Eves R. Efficacy of a Cancer Research UK communication skills training model for oncologists: a randomised controlled trial. Lancet. 2002;359(9307):650-656. doi:10.1016/s0140-6736(02)07810-8
6. Alexander SC, Keitz SA, Sloane R, Tulsky JA. A controlled trial of a short course to improve residents’ communication with patients at the end of life. Acad Med. 2006;81(11):1008-1012. doi:10.1097/01.ACM.0000242580.83851.ad
7. VitalTalk. Resources | VitalTalk. Published September 17, 2020. Accessed May 3, 2021. https://www.vitaltalk.org/resources/
8. Center to Advance Palliative Care. Palliative Care Referrals: 2018-2019 Snapshot. Revised February 1, 2021. https://www.capc.org/documents/917/
9. Butcher L. An Expanding Pool of Neuropalliative Care Specialists Drive the Founding of a New Society for Neuropalliative Care. Neurology Today. 2021;21(7):18-19. doi:10.1097/01.nt.0000743500.07304.cb